A brief and personal history of 'what's in a name' in reproductive genetics.

Although Juliet's claim, 'What's in a name? That which we call a rose by any other name would smell as sweet', may apply to family names, 'that which we call' embryos and procedures in reproductive genetics often smell sweet because the names were created to perfume not-so-sweet-smelling practices. Reproductive-genetic scientists and clinicians, including myself, have used perfumed names to make our research smell sweet for research ethics boards, research grant funders, government regulators, hospital administrators and the general public. The sweet-smelling names in reproductive genetics explored here include 'pre-embryo', preimplantation genetic 'diagnosis', 'normal' embryo, 'suitable' embryo, 'healthy' embryo, preimplantation genetic 'testing', 'non-invasive prenatal testing', 'donation', and most recently 'mitochondrial replacement therapy', a sweet-smelling name for germline nuclear transfer prohibited in antireproductive cloning legislation in most countries.

Arrogance of 'but all you need is a good index finger': A narrative ethics exploration of lack of universal funding of PSA screening in Canada.

This narrative ethics exploration stems from my happy prostate-specific antigen (PSA) story, though it should not have been, as I annually refuse my family physician's recommendation to purchase PSA screening. The reason for my refusal is I teach ethics to medical students and of course must walk the talk, and PSA screening is not publicly funded in the province of Ontario, Canada. In addition, I might have taken false comfort in 'but all you need is a good index finger' to detect prostate cancer, expounded by a senior physician at a national medical conference in 2010, and applauded by the large audience of physicians.

Dissolution of Canada's Single-Tiered Health System Would Threaten the Health of Women with Disabilities.

Dissolution of Canada's single-tiered health system is now before the Supreme Court of British Columbia and will soon be before the Supreme Court of Canada. If our Supreme Court justices are persuaded to dissolve the Canada Health Act, financially advantaged Canadians will be permitted to purchase privileged access to physicians, diagnostic tests, and surgical facilities. This queue jumping will diminish access for the socioeconomically disadvantaged, among whom women are overrepresented, including women living with disabilities, women of Indigenous heritage, and women who have recently immigrated to Canada.

Clinical Research With Pregnant Women: Perspectives of Pregnant Women, Health Care Providers, and Researchers.

Limited clinical research with pregnant women has resulted in insufficient data to promote evidence-informed prenatal care. Charmaz's constructivist grounded theory methodology was used to explore how research with pregnant women would be determined ethically acceptable from the perspectives of pregnant women, health care providers, and researchers in reproductive sciences. Semistructured interviews were conducted with a purposive sample of 12 pregnant women, 10 health care providers, and nine reproductive science researchers.

Women's perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions.

Background: Non-Invasive Prenatal Testing (NIPT) is a technology which provides information about fetal genetic characteristics (including sex) very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women's social and ethical values. We approach the need for ethical policy-making by studying the use of NIPT and emerging policy in the province of Ontario, Canada.

Implications of Applying Minimal Risk Standards in Clinical Research to Information Provision in Prenatal and Pre-conception Care.

Background: There have long been minimal risk thresholds beneath which risks may not need to be discussed in clinical research. This threshold concept may be applied to clinical practice. Our research explored application of minimal risk standards in research regulations to providing information in prenatal and pre-conception care.

"Mitochondrial Replacement" Technologies and Human Germline Nuclear Modification.

In 2015 the United Kingdom became the first jurisdiction to approve "mitochondrial replacement techniques" (MRT), thereby dropping prohibitions against creating human embryos with a permanently altered genetic make-up for purposes of reproduction. MRT is a misnomer because in fact it is the nucleus of the oocyte of the woman who wants a genetically related child that is transferred to the enucleated oocyte of a woman paid to undergo IVF to provide the oocyte. MRT thus constitutes nuclear transfer, which is prohibited by criminal sanctions under sections of laws on reproductive cloning in Canada, the United States, Australia, and European countries that regulate assisted reproduction.

Pregnant women's navigation of information on everyday household chemicals: phthalates as a case study.

Background: Current developments in science and the media have now placed pregnant women in a precarious situation as they are charged with the responsibility to navigate through information sources to make the best decisions for her pregnancy. Yet little is known regarding how pregnant women want to receive and use health information in general, let alone information regarding the uncertain risks to pregnancy in everyday household products such as phthalates found in cosmetics and canned food liners. Using phthalates as an example, this study investigated how pregnant women obtain, evaluate, and act on information regarding their pregnancy.

Recovery of Sleep or Recovery of Self? A Grounded Theory Study of Residents' Decision Making Regarding How to Spend Their Nonclinical Postcall Time.

Purpose: As resident work hours policies evolve, residents' off-duty time remains poorly understood. Despite assumptions about how residents should be using their postcall, off-duty time, there is little research on how residents actually use this time and the reasoning underpinning their activities. This study sought to understand residents' nonclinical postcall activities when they leave the hospital, their decision-making processes, and their perspectives on the relationship between these activities and their well-being or recovery.

Implications of the concept of minimal risk in research on informed choice in clinical practice.

The concept of a minimal risk threshold in research, beneath which exception to informed consent and ethics review processes may occur, has been codified for over 30 years in many national research regulations and by the Council for International Organizations of Medical Sciences. Although minimal risk in research constitutes one of the criteria for allowing waiver of informed consent or modification to the consent process and a large body of literature exists, discussion of a minimal risk threshold in clinical practice has not occurred. One reason for lack of discussion may be that implicit consent is accepted for a wide range of routine clinical practices.

Feelings of Women With Strong Family Histories Who Subsequent to Their Breast Cancer Diagnosis Tested BRCA Positive.

Objective: Family physicians in Canada as reported in several studies do not recognize the importance of family history in relation to breast/ovarian cancer and thus Canadian women with strong family histories continue to develop early-onset breast cancer without the knowledge of or ability to make choices regarding increased surveillance or preventative strategies. This study explored the feelings of women who learned about their hereditary risk only after their diagnosis younger than 52 years and who eventually tested positive for a BRCA gene mutation.

Methods: Thirty-four such women were mailed an invitation to participate in this research including a letter of information, consent form, and discussion prompts for their written narrative response.

Tensions between anonymity and thick description when "studying up" in genetics research.

Anonymity, according to Tilley and Woodthorpe, refers to removing or obscuring participant information, whereas "confidentiality refers to the management of private information." Both are major considerations for ethics review boards, but can be challenges when "studying up" in qualitative research because of the depth, precision, and uniqueness of the information, and the prominence of research participants. In anthropology, providing detailed and nuanced accounts of particular spaces, events, and conditions is essential.

Views of pregnant women and clinicians regarding discussion of exposure to phthalate plasticizers.

Objective: This study explores the views of pregnant women and clinicians regarding discussion of exposure to phthalate plasticizers during pregnancy, subsequent to the 2011 Health Canada ban of certain phthalates at a concentration greater than 1000 mg/kg in baby toys. This occurred with no regulation of products to which pregnant women are exposed, such as food packaging and cosmetics.

Methods: Pregnant women, physicians and midwives were recruited through posters and pamphlets in prenatal clinics in Southwestern Ontario for a semi-structured interview.

Non-invasive prenatal testing: ethics and policy considerations.

New technologies analyzing fetal DNA in maternal blood have led to the wide commercial availability of non-invasive prenatal testing (NIPT). We present here for clinicians the ethical and policy issues related to an emerging practice option. Although NIPT presents opportunities for pregnant women, particularly women who are at increased risk of having a baby with an abnormality or who are otherwise likely to access invasive prenatal testing, NIPT brings significant ethics and policy challenges.

Simple genetics language as source of miscommunication between genetics researchers and potential research participants in informed consent documents.

Informed consent is based on communication, requiring language to convey meanings and ensure understandings. The purpose of this study was to investigate the use of language in informed consent documents used in the genetics research funded by Canadian Institutes of Health Research and Genome Canada. Consent documents were requested from the principal investigators in a recent round of funding.